I still remember the feeling of entering an endless night after learning the diagnosis of infantile spasms for our son, followed by the despair of navigating the medical stuffs while trying to keep our family afloat emotionally and financially, and failing at everything. It lasted for months, until one mother of a little girl with the same seizure type that I had met on Facebook asked me if I had a support group…her group of “exceptional moms” was meeting the following week, would I come? she asked. These ladies rescued me that day, in between laughs and HUGE margaritas. I was able to talk about what our family was going through without hitting a wall of judgmental reactions, incomprehension and unsolicited advices and they got me in touch with the right person to get our son on a Medicaid waiver that would help pay for doctors, therapies and treatment, and provide caregiving support. By listening and sharing their experience, they also made me feel seen, heard and less lonely.
Suddenly, I had a community, or “the best club nobody wants to be a part of”. I kept coming back every month and reaching out by phone, texts, or on the group’s Facebook page when I needed help. After a while, I started also welcoming other moms in the group, whose shoes I had already walked in. Then when our son was declared a candidate for brain surgery to treat his epilepsy, I got a new taste of fear and despair, but this time, I reached out to The Brain Recovery Project (now the Pediatric Epilepsy Surgery Alliance) and found Monika Jones. She listened and shared her experience, guided me through the process of surgery evaluation and prepared me for what would come after. She rescued me again and gave me a new best club that nobody wants to be a part of.
Being given the opportunity of a community and to talk to someone “who gets it” have been a life-line for me and for our family and it feels both important and obvious to provide the same support to another family in need, like ours.
Languages: English, French